Living with PBC

[TonidMother58unkin1]

My name is Toni DunkinI was diagnosed with PBC April 2018. I’ve stopped eating fried food and eat a lot of green leafy vegetables , drinking a lot of water and taking the medicine called oclavia too lower the alkaline phosphate in my liver

[owlshead7]

how old are you? Are your other liver tests in line? Do you have symptoms.

Jim

[TonidMother58unkin1 in reply to owlshead7]

I am 60 yrs old. This is all new to me, MRI, Liver biopsy, bout with diarrhea pain in my right side. I definitely have to watch what I eat. There are a lot of green leafy vegetables and lots of water included in my diet I try not to eat any fried food. I also take 1 teaspoon of Tumeric and 1 teaspoon of ginger paste daily !!.

[TonidMother58unkin1 in reply to TonidMother58unkin1]

Also I have bouts of fatigue and itching. When I asked the Liver specialist what cause this, he said that my autoimmune system was attacking my liver. When asked why. he said only GOD knows why . My PBC is also non-Alcohol non-drug related. It’s stage one. Iam currently take Ocalvia and Ursodiol The medication is very expensive.

[Shulsey in reply to TonidMother58unkin1]

The itching in usually due to your liver not being able to filter all the bile in your blood. This cause the bile salts to come through our pores. There isn't really much one can do for this. My heptologist told me that Benadryl is ok to help with the itch. Plus a ice pack is helpful as well. The horrible fatigue is at times debilitating. This is similar a symptom of PBC. We all have tons in common, but yet this disease can affect us differently.

Welcome to the party 😉. & as I always say,

Stay Strong❣️

Shannon

Stage 4 PBC

[CathyPBC Administrator]

Welcome Toni. Being newly diagnosed is always a bit of challenging time. We're glad you're here and seeking answers as well as to share your experiences with PBC. Since you were diagnosed in April of this year, hopefully by now you've seen a reduction in your liver enzymes to close to or normal levels.

If you've not already done so, please visit pbcers.org for information on PBC, treatments, research and education as well as various support group venues including our Facebook and Yahoo Digest groups as well. We encourage everyone to connect both online and in person with others with PBC. These groups can help you connect with other PBCers around town, the country and the world.

Lastly, ask questions, lots of them. To us, to others with PBC, and especially to your doctor. Always remember what works for one may not work for another and you should always discuss your individual care with your physician. This is especially important before taking any herbal or homeopathic remedies as some that purport to help liver patients actually can do harm. Keep eating healthy and take your prescribed medicine to slow the progression of PBC. Most importantly, believe that you will live with PBC.

Take care,

Cathy

[TonidMother58unkin1 in reply to CathyPBC]

Thanks for the information every little bit helps. My enzyme levels have gone down the only one that is still high is the alkaline phosphate. In the beginning ithe levels were 272 with the last blood work it is down to 170 we still need to get to 125.